Six Months With Mommy: Chronicles from the Battlefronts of Cancer

By Andre Hayes

"This book is a must read for every child and parent-to understand the role that a terminal person's history

plays in how they choose to fight for their lives."

Zeda Foltz -

Then

• Language: English
• Publisher: URLink Print & Media, LLC
• Release date: Aug 29, 2020
• ISBN: 9781647534486

Andre Hayes

Andre N. Hayes earned a degree in criminal Justice from the University of Washington, which he attended on a football scholarship. He currently works as a high school teacher and counselor for the Los Angeles school district.

Book preview

Six Months With Mommy

Copyright © 2020 by Andre Hayes. All rights reserved.

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Published in the United States of America

Library of Congress Control Number: 2020913751

ISBN 978-1-64753-447-9 (Paperback)

ISBN 978-1-64753-448-6 (Digital)

23.06.20

Contents

Foreword

Acknowledgements

Introduction

Psalm 91

Chapter 1: So Who Was Lulla Edwards?

Chapter 2: The Early Years:

Chapter 3: Ages 6-12

Chapter 4: Ages 12-18

Chapter 5: Ages 17-27

Chapter 6: We Reap What We Sew.

Chapter 7: And So It Begins…

Chapter 8: The Olive View Days

Chapter 9: You Can’t Handle The Truth!

Chapter 10: Walking Long Hallways And Praying For Time

Chapter 11: Cancer Makes Fools Of Us All

Chapter 12: Entering The Cul-De-Sac Of Death: The Proverbial End Before The End

Chapter 13: Neither One Of Us, Wants To Be The First To Say Goodbye

Chapter 14: The End Of One Journey Means The Beginning Of Another. It Is A Journey Without Distance.

Chapter 15: The Epilogue

Trail Of Tears: Six Months With Mommy: Chronicles From The Battlefronts Of Cancer

Endnotes

FOREWORD

Over thirty years ago, I was the assistant director of student services and tutoring in the University of Washington Athletic Department, working primarily with the (then) highly-successful Husky football program. The program (at that time), recruited heavily from southern and northern California, and from high schools with less-than stellar or rigorous academic programs for their athletes—especially ethnically or racially underrepresented populations. My role was to run an academic acclimation program—a scholarly boot camp—for these ill-prepared young Black men, to introduce each of them to their ‘new’ life as a STUDENT-athlete on a campus of 35,000 undergraduates. Andre came into a class of very talented football players, and stood out to me at that time, as he was cut against the mold: Mr. Hayes was reserved, keen at observation, still ‘one of the guys’; but, one could tell from the start, he was really focused on attaining his degree. After his graduation, I lost touch with Andre until I read in a University alumni magazine (1996), that he and another former student- athlete, Vince Fudzie, had written two books, The Sport of Learning: A Life Skills Book for Student-Athlete, and an updated version in 2001, Your Brain is a Muscle Too: How Student-Athletes Succeed in College and in Life (Harper-Collins). I purchased both books and have continued to use them in my work, to date.

In the fall of 2013, upon the passing of our beloved Husky football coach, Don James, I happened upon Andre’s beautiful message about Coach on Facebook and, in perusing his page, found his introduction to this book, Six Months with Mommy: Chronicles from the Battlefronts of Cancer.

In all honesty, in that moment of loss of Coach and my own journey through the ups and downs of breast cancer, I just burst into blubbering tears upon reading JUST the title and seeing the picture of Andre and Ms. Lulla! The last thing I was up to doing—was actually reading it—even the introduction! Finally, with Kleenex at hand, a beautiful rose-scented candle lit, a rather large glass of red wine, and pictures of my son and his wife all around me, I began my, Six Months with Mommy.

"Momma began to speak, and her voice cracked as she started to cry, ‘I don’t know how much more pain I am going to have to deal with; but if last night was any indication God please just take me. I don’t want no long & painful suffering.’

I had never heard her talk about wanting to die, wanting to leave this earth. I got up and walked over, and put my arms around her. Momma placed her head on my left shoulder and her tears turned into uncontrollable sobbing.

‘Momma, please listen’, I begged. ‘Please don’t give up, you’re not a quitter. The thing I have always admired about you the most is how you never gave up on us, you never quit. We can fight this thing together, and I will be there with you every step of the way. I love you and am so proud to have you as my mother’, I said as I began to cry. ‘Please don’t give up.’

‘PROMISE ME one thing,’ she said. ‘Promise me you won’t go into no long depression if I die from this. You need to go on with your life, and not get hung up on this,’ she said.

March, 2003. Lulla Elizabeth Hayes—one week before her first hospital admission and four months before her death at age 60. (Six Months with Mommy, by Andre Hayes)

Louise L. Hay, author and founder of Hay House, once said, I am very aware that we can only think one thought at a time. So I refuse to think the negative thoughts that keep the good out. Ms. Hay gave me, her sister in this horrendous fight against cancer, this small jewel of temperament and meditation, to conjure to my forethought as any dark stab of fear seeped in. It is a quotation I had sent in text to my then-25 year old son, in California, from a book I had received from his boss’ wife (a survivor).

After reading the initial publication of, Six Months with Mommy, Bubba’s first words to me by phone from Virginia (where he now lives) were, God mom, we were so lucky! And a few weeks later, when asked to help me write this foreword for Andre, my son immediately asked me to send Ms. Hays’ quote to him again. I didn’t need to ask why. This is what I received from my Bubba (Marlon Stewart, age 29):

Marla and son Marlon

Circa: 2010

When I got the news from my mom that she had cancer it was numbing, so much so it didn’t really sink in until I flew up to be with her for her first, of eight operations, around Christmas. Our parents seem so invincible growing up that you don’t believe anything like this will happen, especially when they sound fine, feel fine, and are in as great of shape as they have been in their life. The most difficult part of the process was being so far away as I was living in California while she was in Washington. There were so many complications, it seemed there were complications with the complications and it just wouldn’t stop, but from California all I could do was continue to be reassuring and let her know how confident I was she would emerge from this a stronger person with a special outlook on life that only those who have dealt with similar situations to her can possibly have. From the moment she told me she had cancer, there wasn’t an instance in which I didn’t think this was going to have a positive ending. I knew that everyone involved (especially her) would be different afterward, more appreciative, happier, more focused on the good in people and in life. I probably responded to her telling me she had cancer by saying something stupid like, When do they get rid of it? I just never believed anything bad was going to happen. This became increasingly difficult as the complications continued, but I have a hard time not finding the positive in things. I hope my positivity and confidence had an impact, because I’m not a doctor. My only way of helping was emotionally, and from as far away as I was—there were a lot of difficult days where I felt helpless. However, I always had confidence in the power of positive thinking. Not that positivity would cure her cancer, or end her complications, but it would help her mind set and make each moment of everyday just a little bit better.

If there is one universal truth amongst women who have been blessed to experience motherhood, it is in the sheer will to live long enough to witness the literal fruits of our labor: happy, healthy, confident, curious, and independent daughters and sons, as they become adults. We mothers, hold fast to this silent prayer—so much so—that the only inkling of its need to surface is when we are literally clocked by an ill-timed hand of fate.

With every fraught of worry over finances and the ability to ‘be strong’; comes with it the anguish of heart which runs deep to the soul. There-in lies a fear of this dreaded malignant and vessel-ravaging illness, and the unfortunate dependence upon a juggernaut of bureaucratic bozos who literally hold their loved-one’s life in their less-than objective talons.

Ms. Lulla Elizabeth Hayes and her son, Andre, peel back each delicate and raw layer of their journey to explore this gauntlet of fears. Sometimes Lulla and Andre present us with a beautiful rose, peeling it back a bit to see the deep beautiful hues and raise the scent of fresh innocent life; and, at other times (too many literally to count), as a ripe onion with every layer bringing pungency and tears.

Dr. Marla Stewart and son Marlon.

Circa: March 2011

Mr. Hayes’ intent in writing, Six Months with Mommy (as he states), is meant to be a guide, or another gentle hand: for caregivers or family members in the throes of this dreaded end of life experience. But, for me, as a neophyte in this personal cancer fight, Andre and his mommy’s words are a personal gift to my son and me.

Albert Schweitzer said, Sometimes our light goes out but is blown into flame by another human being. Each of us owes deepest thanks to those who have rekindled this inner light. In rekindling Ms. Lulla’s flame in his writing, my son and I owe our deepest thanks to Andre for lighting our path through the often-times dark and steep terrain of cancer. But, we also owe our gratitude to both he and Ms. Lulla for illuminating how we may interpret and approach our fight; by opening up the shades to our past. With reverence, respect, some goading and some—Geez, Mom, TMI… .—Andre got his mother to open her journals and tell her personal history in great unadulterated detail. Furthermore, in-like authentic and sometimes-wrenching illustration, Andre snapped a Polaroid where words were just not enough. Six Months with Mommy, is a very personal biography of a mother/son love affair. Ms. Lulla’s every thought, prayer, wish, hope, fear, regret, joy, grit and beauty, are all laid out for each of us mothers’ to relate to—at our most exuberant and our darkest moments. Andre’s every challenge, moments of triumph, pain, fortitude, doubt, self-loathing and self-aggrandizement, hilarity, frustration, depression and optimism, allow all of our sons, fathers, and husbands to know, ‘it’s okay to drop the manly stoicism’ and just let it out!

Six Months with Mommy, is an ode to the grace in which the life and death of a mother can be presented—even in its anguish, indignities and unfairness— by a son, with a rekindling of a flame that may initially struggle to burn, but eventually warms and illuminates all that it touches.

Remember:

Life’s challenges are not supposed to paralyze us, they’re supposed to help us discover who we are.

~Bernice Johnson Reagon

Marla S. Stewart, D.Ed., M.Ed., M.S.

Educational Psychologist Seattle, Washington

Marlon R. Stewart (son)

University of Virginia Men’s Basketball Staff Charlottesville, Virginia

ACKNOWLEDGEMENTS

I would like to give a special thanks to:

To my creator and the grandeur of his universe.

My mother and father (posthumously) for coming together at that exact moment in the time space continuum of that universe to create me.

My mother for her love, courage and determination throughout our journey together.

My adopted stepdad Lindsay Sowell (posthumously), I hear the voice of your wisdom—and it guides me daily.

My adopted stepmom Kathy Umbarger, I know my father’s spirit guided you back into my life. You have filled a chasm in my heart that is too wide to describe with words. Your undying love and support has meant so much to me since my mom’s passing, and I only hope that I can serve you as a son— the way you have loved and served me as a mom.

My former wife Tracey Revis, for all the love, support and courage you demonstrated throughout my mom’s illness. And for being a wonderful mother. If I could have one wish, it would be for our marriage to have worked out.

My daughter Micaela, I hope that we can come together soon.

My son Evan Jenkins, thanks for the idea of the title for this book and all your help while momma was sick. I know it was a lot to ask of a middle school kid.

My daughter Camille Jenkins, thanks for all your help with your brothers during the crisis of mom’s illness.

My three young sons Chad, Matthew and Ross Hayes: may this book serve as a written family history for the rest of your lives, and as an inspiration for you to one day ‘tell your stories’ to your children and the world.

My brother Erik, I hope you read this book and find some peace in it’s contents.

My Grandmother Gladys Hayes (posthumously), for stepping in and filling the void left by the death of my father. Without you my life would not be as fulfilling. I hope that I made you proud!

My Great Grandmother Blanche Hall (posthumously), for teaching me the value of patience and empathy with myself and others.

My Aunt Sylvia Tucker, thanks for the love and support throughout my life. You are like a second mother to me. Also, thanks for reminding me who I am and where I come from. Without you I don’t have any of the knowledge of our family history!

My Uncle Bob, for all the love and support you have given me since I came into this world.

My other Uncle Joe Logan, for all the knowledge and information you have uncovered (and continue to uncover) for me in my life journey. Without your gift of Dr. Robert Anthony’s cd’s, I would not have finished this project!

My Aunt Retha, for all your love and support. Also for all the information on our family history on momma’s side.

Mr. Charles Didinger, for hiring me to teach at Crenshaw H.S. in 2005. You allowed me to keep one of my ‘deathbed promises’ to my mother.

Dr. Sheldon Herman, for all your grace and understanding throughout this crisis.

To all my students over the years, your growth and progress continues to inspire me.

To my students at Crenshaw H.S. in Los Angeles, for being good listeners and test subjects in the infancy of Touchy, Feely Tuesdays.

My friend Kenny Cato, for helping me through one of the darkest chapters of my life!

Dr. William Gerberding, for all your support of my other publications and helping me believe in myself.

My friend Martin French, I have to mention you because we go back to 3rd grade! Much love my brotha!

My friend Kevin Moore, for all the love and support over the years—and for fostering Kyle and Chad’s friendship!

My teammate Vince Fudzie, for lighting a fire under me way back in 1996 when we did our first book. You made me realize what is possible through hard work, dedication and commitment.

My teammate and mentor Darren Witcher, for whipping my ass at the gym; and getting me back into shape! Your speeches and Witcherisms (our next book together) kept me balanced, and your workouts gave me the energy to continue to reach new heights. Peace and love to you my brotha!

My college coach Don James (posthumously), I needed to tap into every ounce of ‘toughness’ and ‘discipline’ that you instilled in me to complete this project. Thanks for helping me become the man that I am.

Marla Stewart, for the blessing of your ‘unpaid editing’ of the book; without you I would not have realized the mistakes I had made with the original editing file. Thanks also for the lovely and heart felt Foreword.

To Erica Brooks, Shawna Lewis, Michelle & Taylor Castro, Marcus Salgado, Kevin Moore, Carlos and Lorena Alvarado, and Linda Sarnataro: FOR YOUR CONTRIBUTIONS TO THE TRAIL OF TEARS.

Dr. Deepak Chopra, Dr. Stephen Covey and Dr. Robert Anthony, your writing and cd’s serve as a daily inspiration to me in my journey!

INTRODUCTION

from left to right: Mommy,

Andre and Chad

Feb. 18th, 2003

Cancer discovery date

It was 11:15pm exactly. My wife and I loaded the kids in the car on that cold night in February 2003. I sat at the wheel for a brief moment, trying to emotionally digest what had just transpired; trying to slow the game down so to speak. As we began our drive from L.A. back to the San Fernando Valley; I couldn’t help but think about how blessed I am to be surrounded by so much love. We had just left my mom’s house after having one of the most compelling and emotional conversations I have ever engaged in with my mother. As I began driving home I periodically glanced into the rearview mirror at each of our 4 children: Our son Evan (my wife’s first born from her previous marriage) who was 12 years old at the time and who has grown into a fine young man; Our 11 year old daughter Camille (my wife’s second child from her first marriage): Our 2 year old Chad Bakari (our first son together), and Matthew Lukus our yet to be born 2nd child together (who I reach over and feel inside my wife’s stomach) who was due in early May. I have so much to be thankful for I thought to myself. If that was the case then why was I sobbing un-controllably? I guess because in my heart I knew that mom probably wouldn’t live to see any of her grandkids into adulthood. I kept having this vision of her demise and death and at times could not focus solely on the road. The reality of the earlier events of the day had begun to set in; my mother Mrs. Lulla E. Hayes had been diagnosed with terminal cancer.

As a child I always feared that this day would come, the day when I would be forced to come to grips with life without my parents. After all I had lost my father Tyrone Hayes back in 1969 when I was only five years old, and for the rest of my life I have always worried subconsciously about the day when I would no longer have any living parents at all. On July 9, 2003 my worst fears were realized when my mother Lulla Elizabeth Hayes passed away from metastasized lung cancer.

I had spent most of my childhood and all of my adult life trying to curtail my mother’s cigarette smoking; but to no avail. I used to literally plead with her as a child to give up cigarettes. I remember often saying Mommy I already don’t have a daddy, and I don’t want to lose you too. Her reply would simply brush off my concerns and pacify me, as she would simply say mommy is going to be alright, I am not going anywhere. This would be followed by the traditional pat on the top of the head. Later in my adult years my frustrations and convictions against her smoking grew even stronger, as I began to fully comprehend the health risks associated with smoking (i.e. lung and heart disease). As my knowledge of the addiction and consequences increased, so did the creative quality of her rhetorical responses. For example: I would say Momma you are killing yourself and you need to quit. She would typically respond with If I have to die, I want to die happy, or the classic cynical response of There is a chance I could die crossing the street and getting hit by a bus. Life is full of risks. If I tried to corner her with reality and statistics she would attempt to put me on the defensive by shifting the focus. She would say something like you’re killing yourself with sweets and I am doing it with cigarettes, so what’s the difference?

Momma and her friend J.T. Circa: 1975

Momma and her friend J.T. Circa: 1975

I realize now that when someone spends 30 years sucking on cancer sticks the outcome is usually grim. Yet oddly enough I thought there was some miraculous way that I could save her. I thought that I could win against all odds and stop her life’s train in it’s tracks (a train that had been moving in the wrong direction health wise for 40 plus years of her adult life). Not only was I optimistic that I could stop it, but I believed that I could pull her off (kicking and screaming no less) and put her on a new train! A train moving at

100mph in the opposite direction of health and vitality. This was the urgency with which she needed to act, due to the degree and stage of her illness at the time of her diagnosis (she was at Stage 5). My foolish optimism was fueled by my lack of knowledge of the struggles that awaited me, battles that would encompass every aspect of my being. This battle against cancer and all it’s allies would not be fought solely in the physical trenches, but in the spiritual, financial, psychological, and emotional battlefields as well, and ultimately within each of these battles there would be several skirmishes. Eventually it would become so overwhelming, that I had to come to accept that neither of us could fight all of these battles simultaneously, as you would need an army of more than one hundred strong working 24-7 to have any success. Thus we were destined to lose the biggest fight of our lives, not because of our weaknesses but because of the devastating strength of our opponent: A disease and a reactive, drug dominated and narrow minded health care system.

In January 2003 when momma first let me and my son Evan feel the lump that was growing out of her right rib cage (just below the breast), I can honestly say that I was deeply saddened and concerned—but not necessarily surprised. In the beginning none of these factors even crossed my mind. My only concern was whether or not it was cancer, and how we would get it removed. Never in my wildest dreams I could have never imagined the pain, horrors and depth of despair awaiting us in the coming months.

Although no biopsy had been performed and no facts were in at that time, I felt in my heart that it was cancer and that it probably spelled the end. While driving on the way home after discovering the lump I tried to crush the voices of pessimism, and think only positive thoughts. I looked over at my son Evan (who by the way so eloquently came up with title for this book), and he could see the concern on my face. It’s going to be okay dad, he said as if he was drilled and scripted on what to say. But then I realized the source of my pessimism. I remembered my mother’s diet and health habits, and reality began to set in. I knew then that we would be fighting an up-hill battle at best, and that there would be no margin for error.

from left to right: Andre, Mom & Erik

Yet at the same time a part of me embraced the opportunity to help her, my final chance to prove to her that I was a worthy son; a son who loved and cared for his mother unconditionally. These were my subconscious issues that I had carried with me since childhood, and as they began to surface my eyes started to well up with tears. I knew that as an adult I had not been able to financially assist my mother the way she would have liked, hell even the way I would have liked. That is where my little brother came into play, as he often paid her rent and gave her financial assistance. It didn’t matter to her at the time where the money came from, because unfortunately she equated financial assistance with how much you cared for her. I now would have a chance to show her that even though I didn’t have money to give her, I loved and cared for her too.

Growing up in a single parent household I was always told that I was the responsible one, and the son of which more was expected. After experiencing life in her house, I saw a major difference in how my brother and I were treated. After a while I came to accept that my brother’s needs were greater than mine, and I built on this acceptance and found perseverance and strength in my attempts to live up to her high expectations. But I also found doubt and disappointment when I came to realize that I could never do enough to gain her stamp of approval. After reading her journal, I realize that she was only repeating the parenting habits of her late Aunt (Aunt Baby), who was her foster parent and whom she could never please. Later mom would tell me that she showered my brother Erik with more because he was weaker and needed more than I did, but that didn’t ease my pain and insecurities. As I got older momma explained to me that this situation developed because of my brother and his mistreatment by my grandmother. For many years my grandmother (my father’s mother) doubted that we had the same father, and it showed in her distant and vindictive treatment of my younger brother. After a while Erik became resentful of her, and often did not want to spend anytime with her at all. Consequentially, because of the many places that I got to go with grandma, my brother understandably developed and inferiority complex. So my mother did the only thing that she thought possible, which was to over compensate with my brother, while at the same time bringing me back down a notch or two. I endured watching her spend more time helping Erik with his homework, buying him larger and better birthday and Christmas gifts, and in my mind showing him more love than me. Erik seemed to get away with everything, while my slightest mistakes did not go un-noticed or un-

punished. This was a vicious weekly cycle that took place for 12 years after the death of my father, and ended when I finally left home for college. I always felt like I was a distant second, in the natural competition between siblings for their mother’s love.

But this time would be different. This time I had a shot at being her hero, the difference maker, the son who saved her life. My brother Erik is in prison for narcotics trafficking for another 18 months so there is not much that he can do directly to help her at this point; he has however provided his love and support over the phone and extensively through his wife Tajuan, who was a major part of our support system. I however could make her recovery my life’s mission—my defining moment, and even if I could only extend her life it would be well worth the fight. I thought to myself, If I can bring them together one last time, it will bring all of us closer together and in the end be the catalyst for bringing my brother & I closer to each other as well. If I could help her live long enough to say goodbye to my brother, then that would be a victory in and of itself. But who am I kidding, that lump in her breast was hard as a rock and according to momma it was growing by the day. To top it off my mom was still in the biopsy stages and had no medical insurance. It’s gonna take a miracle I thought to myself on the way home that night.

Mom & my wife Tracey

First hospital admission

April 2, 2003

Three weeks later a biopsy would confirm our worst fears, that the lump was a malignant tumor and there was a good chance that it had metastasized (spread) to the rest of her body. This news came to me on February 18th, and it was left on my cell phone voice mail at exactly 3:21pm. I will never forget that moment: I had just started a new job at a labor union 3 days prior, and we were returning from a demonstration when the message arrived. As I checked my voice mail outside in the parking lot at my job and heard my mom’s voice trembling and crying, I felt my entire world stop. She said, Hi it’s mommy. The doctor called and said (voice cracking) that it’s cancer and it’s really bad. Call me when you get this message. It’s as if everything around me was frozen. I saw birds flying in slow motion, car horns became background noise and the entire universe around me became insignificant. My mother is going to die, and there is nothing I can do I thought to myself as I began crying hysterically, the kind of deep hard crying that comes from the depths of your soul. The kind of crying you do when you feel overwhelmed with despair, hopelessness or when someone close to you dies. It was at that moment that I realized how much she meant to me, and how my world would crumble if she died. Although our relationship had been tumultuous throughout my childhood, we had come to truly love, understand and respect each other over the last decade or so. Mommy had become my rock, my source of support when things went wrong, and my source of encouragement when things went right and I didn’t give myself enough credit. Mommy had also become more human to me, admitting her parenting mistakes to me (both in person and in letters), and how she did not love Erik more than me, she just loved each of us differently. Mommy explained to me that as my kids get older, I would fully understand the meaning of what she is saying. Mom was also constantly uplifting me emotionally and spiritually by telling me how proud she was to have me as a son, something she had rarely done when I was younger. In the past few years I had come to cherish her with the same passion with which I had tried to win her approval, because I realized that she finally approved of me as a son and as a man. My mother had come into a beautiful and tranquil place in my life and my heart, and now this disease strikes. Dammit this is not fair; why her and why now I shouted in a half screaming and half crying voice, thankfully with the windows rolled up in my car.

I had to get a hold of my emotions, or I would not have been able to drive home that day. After all I still had a wife and 3.5 children who needed me too (my wife was 5 months pregnant at the time), so I knew that I had to see my way clearly through all of this—win or lose.

Drive home safely, and I will think this thing out when I get home I heard my inner voice say as I was getting in my car. That day—that moment seems like yesterday and an eternity ago all at once. It feels like yesterday because the memory of the pain and intensity are so vivid in my mind. Yet it seems so far away because each and everyday after that was apart of a long and pivotal journey in her attempt at a miracle recovery.

As I reflect on that journey now, I realize that one of the most difficult tasks in all of this is helplessly watching a loved one deteriorate completely before your eyes. In my lifetime, my mother’s strength and dependability had come to symbolize the image of a strong oak tree; losing leaves in the fall and fighting some tough winters, but ultimately always bouncing back strong in the spring when everything living becomes new again. But this time would be different, for that tree would lose it’s leaves one last time into the long winter months and well into the spring. This time there would be no physical renewal or new growth. There would be sorrow, sickness and despair. I kept hoping for new growth against all probability, but there was none to be found. With every branch that was destroyed, I tried so desperately to replace it with my own make shift branches—but to no avail. God and life just don’t work that way, as much as I wished that to be the case. The leaves and bark that had fallen became to numerous to replace, and eventually (towards the end) the tree was bare. As only the shell of that great oak tree that was symbolic of my mother—still remained.

Andre & Mommy at Chemotherapy

May 2003

But this was no ordinary shell, because it was by no means hollow. For inside of it a spiritual revival and transformation was occurring right before my eyes. As I looked further inside, I could see the energy and incredible love emanating from her soul as it began to somehow overshadow the physical decay and make it seem meaningless. Of course I was hurt and saddened by the erosion of her physical being, but I was also uplifted and healed by the resurgence (on a deeper level) of her spirit. Somehow I knew everything was going to be okay.

I wanted so much to take away some of her pain and suffering, to bear the burden of her illness for her. I felt it was my chance to give a love so precious and priceless to her just as she had given it to me as a child; love that is unconditional. It is that love which we rarely have the chance to return to our parents, and now the opportunity was sitting right in my lap. My opportunity came in the form of being her caregiver for the last six months of her life, and the most important and enlightening six months of my own. However, I didn’t fully grasp the enormous & complex task I was about to undertake.

I never knew how much love I was capable of giving, so I guess in a way this was a good thing as my mother would say. I learned so much about who my mother was as a person, but more importantly I learned a lot about myself in this whole process. In the beginning I was mainly commissioned to provide transportation and moral support; to do internet research on the latest alternative and holistic treatments, and to get her vitamins and herbs ground up and mixed into a cup of fresh squeezed orange juice three times per day. At that time I thought it was a daunting task, but it was only the beginning. With each passing month my duties grew by leaps and bounds; when she was hospitalized I was there to provide reassurance. When she was released from the hospital I was there to help her make the transition. When it was time for chemotherapy and radiation I was there for that too.

By the end of May 2003 she had moved in with me (figuratively kicking and screaming the whole way), and we displaced my daughter Camille’s bed with mom’s hospital bed. We had all the necessary medical equipment delivered to the house, and when it was all done the room was transformed into an Oncology ward. I typed up a daily checklist and had it blown up, laminated it and screwed it into the wall. This in response to the overload of duties connected with her daily care. When she could no longer sit on the toilet or stand on her own I was there to be her legs and her lower back., we would literally waltz to the portable toilet everyday—what I called 1000 Dances. I would rap my arms around her back and do a ¾ squat with all of her body weight. When she could no longer shower, my wife and I were there to bathe her. When she could no longer feed herself, I was there with a baby spoon from bowl to mouth. Through it all I never stopped to think about all that God had allowed my life to evolve into, but now as I reflect on it I think it was all quite a remarkable transformation. Towards the end when the doctors sent her home because there was nothing more that western medical science could do, I was there to lift her spirits and give her hope in the face of anxiety and hopelessness.

There were times when I briefly and superficially contemplated life without her, not daring to wade to deeply into these emotionally dark waters. The feelings of fear were like the ones I had as a child going swimming in the deep end of the pool for the first time with no life jacket. I was afraid of drowning in that place, of being overcome by the depth and permanence of the situation. I knew that this venture was something that could not be practiced or rehearsed, and yet I wanted to familiarize myself with the feelings that would surely overcome me when the time arrived. Within the deepest part of my soul I knew I had to get ready, but how?

Then all of sudden on June 24th it was as if God began further preparing me for what was to come. My friend and former college teammate at the University of Washington Fred Small (we played football together) was killed in a motorcycle accident. Fred was one of the strongest and bravest individuals I know, and he was working as a traffic policeman for the Inglewood Police Department. I got the news that morning on my cell phone, just as I was ready to get my haircut. My friend J.C. Pearson called me and I nearly dropped the phone when I got the news. I cried for 5 minutes in my car, and could not help but draw a parallel between Fred’s death, and the impending demise of my mother. When I came home and walked into see my mother lying in bed, it all became very clear to me. This was another part of my training to bury my mother, the last class if you will. I realized that everything in your life journey prepares you for everything else, you have only to allow the lessons to unfold before you. Don’t shut out the experiences in your life just because they are painful, but rather wash yourself in them and use them in a transformative manner. Every day before today has prepared you for this time and place, and there is no greater reminder of this than caregiving for the gravely ill.

I realize now that during most days I had very little time to reflect and get emotional. My routine as a caregiver was monotonous and never ending. Each morning, I would get up at 6:30am and help her to the bathroom; and in the end she could only go as far as the portable toilet in her room. After that I would get her hygiene needs met, delivering her toothbrush and a warm face cloth. (I tried as meticulously as I could to duplicate the hospital schedule, with the hopes that this would somehow prolong or help the quality of her life). I would wipe her face, clean out her eyes, and when we were done it was time to read. Mommy wanted me to read two things to her everyday: Psalm 91 and The Daily Word (a daily prayer book that was first given to me by my Aunt Sylvia). At the end of each one, she would triumphantly shout Amen, and although she was Catholic it was as if she was testifying in a Baptist church. It was imperative that I read this to her each day, and if I forgot her day didn’t seem to go quite right. If I found myself rushing off to work or to an appointment, right before I’d leave she would yell out Hayes, we didn’t do our reading today. No matter how little time I had, I would always come back and take five minutes to satisfy her spiritual need, even though I would sometimes read faster than she liked. Never the less I would always come back and read to her, and I would always feel better too. It’s as if we both needed to start our day off with prayer and strengthening our faith, and I soon realized how precious these moments were to both of us; because they would be the last moments we would spend together alone on this earth.

There are three things that I want my readers to get out of this book:

First, to help them come to an understanding of the multiple dynamics involved in being a caregiver of a terminally ill family member, multiple fronts in the battle to save someone’s life—or to even extend it. Going into this ordeal, I never knew how many fronts there were in the war against cancer: emotional fronts, socio-economic fronts, psychological fronts, financial fronts, racial fronts, the element of fear (the front of the unknown) and ultimately death.

Secondly, to assist and encourage the caregiver to research and reflect on who their loved one really is at a deep inner level; because this dictates and shapes how they respond to the multiple battlefronts that they face. Ultimately this knowledge will lead you beyond understanding and into empathic thinking, and eventually to the depths of understanding at the soul level. In other words you will what they feel. I was forced to go deep into my mother’s childhood to examine who she really was as a person and as a woman. This provided a road map into her core values, her strengths and weaknesses, and her discipline or lack thereof. Then I delved into my own childhood experiences with her and my brother to see how that shaped our relationship and interactions; and this would ultimately dictate how she received my care advice—and whether or not she would heed it.

Final hospital Admission

July 1st, 2003

Finally, caregivers need to know that you ultimately have very little control in your battles with the dynamics of this disease, and thus you must learn to ‘surrender’ to the moment—wherever ‘the moment’ may take you. Resistance is ultimately futile. Some battles will be worth fighting, while others will not. You must make prudent choices as to where to put your energy in all of this.

In my situation, sometimes these battles would rage on separate days, but most of the time these fronts had to be dealt with and fought on the same day within hours or minutes of each other. This I believe is ultimately what defeats most people who choose to wage this war: many fronts attack you simultaneously using the element of surprise. I never saw any of the other assaults coming, because I was so focused and intimidated by the main battlefronts of the disease itself. But while I was taking my shots at the disease I was continually blind-sided and weakened by these other battles that I never saw coming; battles that I had no time to prepare for. These battles would cripple me emotionally, psychologically and financially.

Mom and Grandson Matthew

During her final days

June 2003

I wish someone could have given me a heads up as to what I was dealing with, to give me time to prepare a battle plan. This is why I want to take this experience and share it with other cancer victims and their families. I want to warn them of the dangers that lie ahead that are tangential to the disease itself. I want to caution them as to how they can prepare themselves for such moments, and in some instances learn when to surrender. I want to encourage them not to quit when the whole struggle seems frustrating and overwhelming. I want to give them what no one was able to give me: hope and insight on what was to come.

I cannot say for sure that having this information ahead of time would have saved or prolonged my mother’s life, nor can I state the contrary. I do know this; it would have made our last months and days together much more enriching, more joyful and emotionally healthier, and it would have given us a chance to brace ourselves before each heavy weight punch; to brace for impact so to speak. Too many times after getting hit by surprise attacks in these battles, it would take us days and weeks to recover. Problem is when you are terminal—you don’t have days and weeks to lick your wounds and recover, and your life is reduced to a series of hours and minutes which cannot be wasted on regrouping.

The Morning after mom’s passing

July 10, 2003

I hope that you will be inspired by this book; that you will take solace in knowing what the realities are for all concerned. This disease devastates families and scars them for life; while the subplots of the disease increase this devastation exponentially. It is my hope to help you prepare a defense and WARNING SYSTEM that will help you survive this struggle with the minimum amount of emotional and collateral damage. This guidebook will give you an overview of more than the obvious (the disease), and delve into the hidden struggles that inevitably await you. It will explain the importance of fully understanding who your loved one is, by completely knowing about their lives all the way back to childhood. It will show you how their life experiences have shaped who they are and how they will fight these battles. You will learn what you can and can’t expect from them. Most of all, you will learn to stop trying to make sense of this, because in the end none of it makes sense.

Hopefully you can beat the odds and beat the disease that has been inflicted on you or your loved one, but in the meantime I would like to help you in your struggle towards a moral victory; so that no matter what happens in your battle eventually you can get your life back on track. If you have a game plan you can minimize the damage to yourself, your family and ultimately your sense of self; in the hopes that the emotional pieces that you will possibly be blown into are large enough to be seamlessly glued back together. Awareness will help you appreciate the amount of time that you have left with your loved one, and get you prepared to receive a final offering—when death finally gives you something back. Please accept this gift from my mother, as I share our lives with you in Six Months with Mommy.

PSALM 91

Those who live in the shelter of the Most High

Will find rest in the shadow of the almighty

This I declare of the LORD:

He alone is my refuge, my place of safety;

He is my God, and I am trusting him For

he will rescue you from every trap And

protect you from the fatal plague

He will shield you with his wings

He will shelter you with his feathers.

His faithful promises are your armor and protection.

Do not be afraid of the terrors of the night,

nor fear the dangers of the day,

nor dread the plague that stalks in darkness,

nor the disaster that strikes at midday.

Though a thousand fall at your side,

Though ten thousand are dying around you,

These evils will not touch you.

But you will see it with your eyes;

You will se how the wicked are punished.

If you make the LORD your refuge,

If you make the Most High your shelter,

No evil will conquer you;

No plague will come near your dwelling.

For he orders his angels to protect you wherever you go.

They will hold you with their hands

To keep you from striking your foot on a stone.

You will trample down lions and poisonous snakes;

You will crush fierce lions and serpents under your feet!

The LORD says, "I will rescue those who love me.

I will protect those who trust in my name.

When they call on me, I will answer;

I will be with them in trouble.

I will rescue them and honor them.

I will satisfy them with a long life and give them my salvation."

CHAPTER ONE

SO WHO WAS LULLA EDWARDS?

"I can remember my mom being very ill, and my mom living with my Aunt Baby (Matilda Alexander), who is taking care of her. She has this tube in her throat, and I really don’t know why. All I know is that it makes me sad, but I still like to sit by her each day and I know I love her so much. If she could talk I know she would tell me she loves me too."

Lulla Edwards Hayes—Age 4

Life Journal Entry—1996

Circa 1947

It has always seemed challenging to me when posed with the question of where to start when telling someone’s life story, especially posthumously. It is even more difficult when that someone is your mother, a person whom you were not even acquainted with during first 21 years of their life; and for all intents and purposes you really do not get know until you are an adult and there is a level of mutual understanding.

In one’s younger years the acquaintance that is made is based on the standard roles of mother and son, and if you are fortunate you will get the chance to really get acquainted with your parents from the standpoint of human to human (as I did during my mother’s demise); and subsequently all of the fears, weaknesses, hopes, joys and anxieties that go along with simply being human.

l-r: Cousin Maggie and Lulla Edwards Circa 1953

This is the only available photograph of my mother as a child.

Chronologically we know that a person’s life begins at birth, but spiritually and emotionally some people feel that there is the day they were born and then there is the day their lives really began. Because of my mother’s reluctance to discuss her childhood at all when we were growing up, I am compelled to think that she was of this school of thought. Based on what she shared with me during our 6 months together, I think she believed that her birthday and the real beginning of her life occupied two completely different moments in time.

I realize now after all of our conversations the past 6 months, that there was a reason she kept her childhood in the dark; there was too much sadness and despair that was woven into her early years. Momma told me that she watched her mom suffer from terminal illness the first 3 years of her life, and then she watched helplessly as she deteriorated and eventually died before she turned 6. This was a lot for a small child to deal with. As I watched momma become bed ridden (as the cancer had spread from her pelvis to the base of her spinal chord), I thought about how disheartening it must have been for her to have your only living memory of your mom be that of a sickly and bed ridden person. Momma said that the indelible and un-erasable image of her mother suffering pops into her head every time the subject of her mother comes up. No wonder she didn’t discuss it that often; that kind of pain (of a three year old) scars you for life.

During the last 6 months before her death, momma gave me new bits and pieces of her childhood that astounded me. She shared with me the pain of her mom’s death, and the great sense of loss and abandonment when her father took her to live with her mom’s sister (Aunt Baby) because he supposedly couldn’t handle raising children. These feelings were compounded when good old grandpa re-married another woman who already had two kids. As a child I guess you never get over the feeling of not being worthy or deserving of love, and a part of momma never got over this. As momma told me this story back in March of 2003 while crying and half hysterical, the tears and words were not those of a hardened 60 year old woman, but those of an insecure 5 year old who longed for her real parents. Phrases such as I can’t understand why daddy left me with Aunt Baby, and then went and raised someone else’s kids and didn’t he know I needed his love too emanated from her lips repeatedly that March afternoon.

As we sat on the bed that day, she began to recite bits and pieces of her life, but strangely not using past tense language—but from a present day perspective. I later discovered that she spoke that day just as she had written in the journal of her life story; as though she was reliving her entire life all over again in her mind. Subconsciously she was reliving moments that had caused her so much pain with great accuracy; it was if a video tape was being looped over and over again in her mind and she couldn’t stop it.

All in all after researching her journal, I have decided to use her version of her life in this segment of the book. After all if I re-tell it as I heard it I might screw it up, so the following is excerpted from her journal exactly as it was written some 5 years ago. The typos have been left in to fulfill the emotional accuracy of the document.

Journal Entry

In her own words…

My name is Lulu Elizabeth Edwards and I was born Dec. 8th 1942 to Mrs. Evelyn Smith Edwards and Mr. Willie Edwards. To the best of my knowledge I was born in Lowdes County Alabama. I know my mom was ill for a long time and I know she was ill even during her pregnancy with me. I have twin sisters, a brother and 2 half brothers & 2 half sisters. My twin sisters are named Edna and Rether Edwards, my brother’s name is Walsh Daniel Edwards, my ½ sisters name is Veda, and I really don’t know my other half sister. My half brother’s names are George Edwards and Willie Edwards Jr.

I know it’s about the year 1947 and I am or will be around 4 or 5 years old on December 8th of this year. I can remember my mom being very ill, and my mom living with my Aunt Baby (Matilda Alexander), who is taking care of her. She has this tube in her throat, and I really don’t know why. All I know is that it makes me sad, but I still like to sit by her each day and I know I love her so much. If she could talk I know she would tell me she loves me too. I think my twin sisters are living with my dad and so is my brother. I really don’t know where my half sisters and brothers are, I never see them. I do remember that I see my twin sisters and my brother Walsh about once a week. I really don’t know my dad but I love him. He never seemed to care that much about me.

My mom died when I started the 1st grade. I can remember because all of a sudden one day I came home and I was told she had gone away to be with God. I can remember that I cried so much I got sick to my stomach. I also remember that I met all my mom’s sisters that day, even the ones who lived far away in Chicago. I can remember one cold day, we all were together playing and my aunts were discussing where we would livee and with who. It was decided that since I was the youngest I should live with my Aunt Eddie Mae, who lived right next door. My Aunt Eddie Mae and my Uncle Walsh had a little girl named Maggie, and I would be company for her.

My Aunt Eddie Mae and Aunt Baby worked in a factory making clothes. They both work so hard. My Aunt Baby’s husband worked the railroad and Uncle Walsh (Aunt Eddie Mae’s husband) worked downtown at one of the large hotels. I moved with my Aunt Eddie Mae and her family, and Maggie and I grew close just like sisters. My real sisters stayed mostly with my Grandfather Penny Smith.

I was in third grade now and still living my Aunt Eddie Mae. I didn’t like it at first but now I am getting used to it. My Aunt & Uncle are nice people but they don’t treat me as well as they treat their own daughter, but at least I get to see my sisters once a month. My twin sisters are 4 years ahead of me and they attend public school, and I have to attend Catholic school. I was afraid at first but then I learned to like school. I remember my first grade teacher was Sister